I was just thinking – National CF T-Shirt Day

Here's a sample front view

Let’s have a national cystic fibrosis awareness day in which everyone fighting this disease wears a special CF T-shirt. If the idea plays out the way I think it might, one would wear a special CF T-shirt in public on a certain day and randomly see others wearing the same shirt. It’s all about that moment of solidarity with others in the fight who might cross paths without ever being aware of each other.

How many of us out there are involved in the fight against CF?

It would be fun to search for others wearing the shirt. We could post pictures online of some chance encounters. Of course, we might not be able to meet each other up close due to germs, but it would still be nice to know how many others are out there on a specified day.

It would take the help of the CF Foundation and other excellent organizations like sharktank.orgcysticlife.org,  BEF.org and cysticfibrosis.com to pull off a coordinated effort like this. CF bloggers could pitch in. Even CF clinics could join in the fun and promote the day. Everyone could come together for this one special promotion.

I'm sure someone can make a much better design. Just a thought starter for the back.

Someone would have to sell the limited edition shirt and everyone would have to communicate the day to wear the t-shirt, which would be best in summer (t-shirt weather). The nice thing about t-shirts is that they’re not that expensive. And all profits could go to the Foundation, sharktank, cysticlife, cysticfibrosis.com or whoever sells the shirts. I’d order at least three for my family and more for friends. The shirt would have to be colorful – yellow or orange or lime green. It needs to stand out.

Who knows what publicity it might generate with news media?

In my crazy mind it would be similar to something the artist Christo does when he wraps a bridge in colorful fabric or places gates in Central Park. It would be a living, breathing, moving display of the fight against cystic fibrosis. Oh, and let’s not forget our friends in England, Canada and other countries. We are one in the fight. And on one summer day in 2011, let’s see how large our army is. Am I crazy? Don’t answer that.

Three wishes

[No medical advice is given in this post or any other post on this site. Please see disclaimer in left column.]

Last night I fantasized that I had three wishes for cystic fibrosis.

I wished for a cure for all CFer’s, our lung function and digestive issues restored to normal, and lost warriors returned to life. These wishes came to mind in a heartbeat. But as my mind soaked in the warm bliss of fantasizing that all of these could come true one day, I changed my mental game to think up more immediate and practical wishes. (There will be a cure one day.)

If only it were as easy as rubbing a bottle

So with my brain-game rules changed, I wished for the following:

1)  BITC gets tested, launched, and becomes the most effective CF treatment ever. What would be more fitting than Melanie Childers and Sharktank.org delivering the grassroots knockout punch to CF? Karmic justice at its finest. My fear here is that BITC with its great potential will take mainstream science and medical companies too long to get moving. Hello, CF Foundation or rich donors? Time to step up with some research cash and get BITC  fast-tracked, as you don’t want to say “would have, could have, should have” years from now on this potential game changer.

2) All CF clinics deliver a high-standard of care. Years ago, my clinic had really lax standards – they used a peak flow meter to test lung function. As a result, my numbers went down and I lost some of my lung function forever. In came a new, excellent team with mandatory quarterly visits, PFT testing at clinic, and I.V.s when PFTs drop 10 percent or more. I’ve read others’ blogs and discovered that some clinics sound like my old clinic and are not being aggressive in treating CF. Thank you to the CF Foundation for setting higher standards for CF Centers. My wish is for them to push harder and ensure all CFer’s get the same high level of care. Oh, yeah, how about getting trial drugs out sooner? Please.

3) Every state automatically enrolls its residents in the organ donation program. Individuals should have to opt out of the organ donor plan, not in. This would help a lot of CFer’s and others waiting for organ donations. It seems like such an obvious change and I read that some states may move in this direction. Yay. Move faster, please, as a country.

X) This one is complete fantasy. I wish CF had a physical presence and I could hunt it down and kill it. But I wouldn’t kill it right away. I would torture it. And I would have no guilt about doing so. Imagine the worst, most painful torture scenes you’ve ever seen. I would do that and more to CF and it would feel so good to make it pay for the suffering it has caused to CF’ers and their families and friends.

Those were my immediate wishes. Now all I have to do is find a genie bottle, rub it, and make my wishes. Don’t be surprised when you wake up one day in perfect health and you hear screams coming from the other room. It’s just me with an ice pick engraving names into CF’s flabby skin.

Stay well.

“Say hello to my little friends – broccoli and coleslaw”

If you read my earlier post on broccoli, then you know I’ve been shoveling in tons of the stuff.  I also added cole slaw for the cabbage and occasionally cauliflower.  Soon, I will find broccoli sprouts and start eating those, too.

All in the name of searching out sharktank.org’s mysterious Isothiocyanates.  That’s why I’m eating cruciferous vegetables.

I won’t repeat my earlier post.  But here’s the latest. After 40 plus years of taking enzymes, first the powdered form with applesauce when I was a child and now capsules, I can’t find the correct dosage. I’m constipated a lot and my digestion and the results of it have been smaller and perfect.

Last week on a business trip, I forgot to refill my enzymes for dinner and had only three for a large meal.  I thought I would pay the price, but all was fine.

I don’t get it and don’t know if it has anything to do with the Isothiocyanates.  I’m not used to this level of good digestion over such a long period of time.

I’ll be calling my CF Center this week to discuss enzyme dosages.  It’s been a long time since I had that conversation.

The Ultimate Cage Match? Fighting cystic fibrosis

Have you ever watched Ultimate Fighting?  It’s a simple concept: two fighters enter a caged ring and beat the living daylights out of each other until one of them is knocked out, gives up, or time runs out. It’s pretty brutal and blood is often spilled. I watch 30 seconds before I switch channels.

What strikes me about the cage match is how similar it feels to being boxed in or trapped by cystic fibrosis. Years ago, the cage was much larger and my opponent, cf, much weaker and inexperienced.  It was a mental game.  But my opponent has grown stronger and learned to punch and cheat and kick me in the groin.  The cage walls have moved closer together, too

Over the years, some great weapons have been tossed in the cage: TOBI, Pulmozyme, Hypertonic Saline, AZLI.  With them I have been able to give the hulking mass of bacteria a good beating.  Or, perhaps, at least moved it back to its corner to regain its strength.

But the cage feels tiny now and my opponent stronger and craftier.  The marks of two collapsed lungs scar my right chest, but most of the damage inflicted has been internal, though I’ve seen plenty of the blood.  And yet, I am so lucky, as it has hit others much harder and earlier in life.  But I still feel trapped by it, as it affects each decision and limits my choices in life. Just the stress it causes alone, is suffocating some days.

But I am lucky, very lucky.  I have my family, the CFF, my Twitter friends, my CF team, and Sharktank.org.  I know that soon another weapon will be thrown in the ring.  And better yet, one day someone will throw in the medieval battle mace of cf weapons.

With my spiked weapon in hand, I am going to beat the living shit out of this terrible disease for all the lives it has taken and the suffering it has caused. And then I’m going to beat it some more.  No horror movie ending here where the bad guy gets up again and again.  I’ll make sure of that.

Then I’m going to open the cage door and walk out, bloodied but still standing, the enemy defeated. What a day that will be.

I heart Broccoli and Sharktank.org – CF fighters

I have learned to love broccoli.  It hasn’t been easy and it still tastes better with honey. Yet, I eat it everyday – everyday.  Not a piece or two or three, but a bowlful at dinner each night.  I feel like a horse chewing it up.

Why have I gone on this broccoli bender?

Two months ago I read an article that broccoli might combat the effects of CF.  As someone who has tried many alternative therapies to calm the cf beast (I knew about ibuprofen before the docs did), this one seemed like a no-brainer.  So, my wife started serving up bowls full of it because I wanted as much of the mystery chemical as possible.

This is what happened or didn’t happen . . .

After years of bad, unpredictable digestion and IBS, my digestion became perfect.  Yes, perfect. Not almost good or near perfect. It became perfect for months. I expected the opposite – that the amount of broccoli I was eating would be the equivalent of a bottle of Liquid Plumber on my system.

But I was wrong. Something else happened.

I started noticing that I could reduce my enzymes by 1 or 2 or 3 capsules per meal.  And, I gained weight, which I don’t need to do.  But the pounds came against my will.

Now it’s important to know that this happened before I knew about sharktank.org’s excellent research into Benzyl Isothiocyanate (BITC), which is similar to the AITC in broccoli.  The reason why it’s important to know is that my CF Clinic started missing me during the great broccoli experiment and was worried.  I remember saying to them at a recent appointment these exact words “there was a period of a few weeks when I felt normal, like I didn’t have CF.”

Enter the most excellent Sharktank.  When they experimented with oral BITC, they said the positive benefits worked for a while on the lungs, but then localized to improving the digestive aspects of cf (something about the liver filtering out BITC. Check out their site for precise info).  Now they are looking at using a trans-dermal patch or something similar to deliver the BITC.

So, here is my question? Was it broccoli or the AITC?  Or both?  I continue eating the nasty cruciferous vegetable and my digestion is great.  I’ve also thrown in cabbage, which has BITC and all is fine.

Could it just have been a run of good health or my imagination?  Absolutely either one.  Not exactly a scientific experiment was it?  Had I know about sharktank at the time I would be more inclined to say I was under the influence of positive thinking. But I hadn’t read their research at that point.  One day I had IBS; the next day I didn’t.

I try never to recommend any therapies for fear of hurting someone.  But broccoli?  It seems like low hanging fruit (or vegetable) for those of us fighting for any edge we can get.  You may want to discuss it with your CF team and get their opinion.  In the meantime, I await the continued research of sharktank.org with respect, caution and hope.

p.s. If you want more information, please check out sharktank.org and the following page I found on the Internet (be sure you scan to the bottom for a list of foods:  http://lpi.oregonstate.edu/infocenter/phytochemicals/isothio/